Before I go too far I first want to point out the excellent and speedy treatment I received once diagnosed with bowel cancer just before Christmas 2011. I Started my Chemo and Radio therapy in January 2021, and was operated on, on the 29th May 2012 ( bad timing in that it meant I spent the Jubilee Weekend stuck in hospital.) I my rectum removed and was fitted with a stoma.
Following my discharge I was visited once a week by the Stoma Nurse and every second day by the Local District Nurse(s) to keep an eye on my “Bottom” wound. As it was healing up nicely I was expected to just use a bit of non-woven cloth over a sanitary towel to “dress” the wound. After a few weeks the Stoma nurse went to once a Fortnight, and I was discharged from the district nurses as the wound had “healed” up.
All was fine until my stoma nurse went away on holiday for a couple of weeks. It was then that the “Any Problems just call” promise failed, and I was unsure as to whom to turn to. The Problem started on Sunday, I had just been for a walk, showered, and it was whilst drying myself that I noticed blood on the towel from my Bottom Wound. I was fortunate in that I had an appointment with the Surgical Consultant the following Wednesday so I did not do much about it until then.
On my Visit I told them about the blood and the sensation that it felt like I had a Tennis Ball or something stuffed down my underwear. Further (painful) examination revealed that I had a “Cavity” 5cm deep and that the wound had opened up to a 2cm opening. It was from here on that I felt that I was falling between stools as to who to talk to and who was reasonable for my treatment and to who to turn to for advice.
I was put on a pack and dress programme, to allow the “Cavity” to close up internally first, I can only liken it to having to squeeze the toothpaste out of the tube before the cap can be put on. This was fine as it was changed every two days at the hospital, however they wanted me tp back under the care of the District Nurses, on have it changed daily. This is when the lack of information started to bother me. What could / should I do to help the process? Should I spend all day in bed, could I walk around, should I sit or stand. Following no precise instructions, I returned to work, after all, all I did at work was much the same as I did at home- sit down at my computer, getting up to go to the toilet and make tea. This went on for a few weeks, and I felt a lot better with the cavity packed, it was only the stick plaster pulling on my hairy bum that gave me some discomfort.
It was around now that I signed up to the website to see if anyone else had felt that same. I found some peoples “events” similar to mine as well as some of the problems encountered.
I have had further appointments with the Chemotherapy Consultants junior, however they will not start treatment until the wound has healed, but are backward in coming forward in suggesting what I should be doing, they were happy that I had returned to work though.
It was not until I started to plan a weekend at my parents that advice started to come from the District Nurses, all negative. For once I told them I was planning a 2 ½ hour car journey that I was told that I should not sit down for long periods. I am now also receiving contrasting info on the state of my wound. The Consultant had it reducing down to a 2cm deep cavity, however a few days later the District Nurses have it back to 5cm. They also want me to go to either the hospital, or my practice Nurse to have the dressing changed, esp as I can drive and they are only meant to tend to the house bound. This coming from the people telling me not to drive!!!.
So tomorrow it’s a call to the hospital to get (hopefully) some feedback from them.
Oh by the way the stoma nurse has only seen me twice since her return from holiday, both at other hospital appointments, and said that she will see me once the chemo starts, as this could affect the stoma.
If anyone has been through this please get in touch, as I am getting very frustrated, and concerned about the amount of time I am having off work. I must admit that so far they have been very good about it, I suppose that what comes from working for a small company where two of the partners have been affect by cancer in one way or another, but as it is a small company it can’t go on forever.
